Been trying to get in touch with my specialist nurse to ask her advice as I have been told by another doctor who dosent know me very well that I should exercise and eat healthier and it's caused by low mood how I been feeling when basically my specialist nurse told me a few weeks before that my exercise capacity is limited and my valve is getting worse and I am starting to experience symptoms with it and I should take it easy so I'm getting two different opinions and I don't know which one to follow?? I know every one is different and exercise depends on the person but I'm just at a loss with this. As I want to try it but I don't want something bad to happen when I do so I need confirmation from my specialist but there not responding to emails and phone calls??
Exercise and significant aortic steno... - British Heart Fou...
Exercise and significant aortic stenosis and moderate to severe aortic regurgitation.
you should certainly eat as healthily as possible. You probably know this already.
As far as exercise goes, we all need to move our bodies around. You could start for instance with a fifteen minute slow walk and build your way up, a little faster and longer. Just don’t overdo it -:don’t get so out of breath that you cannot talk. Out of breath so you can still talk but not sing is a good criterion, I think.
Other posters might have other suggestions.
When I was diagnosed with severe aortic stenosis I asked my GP and a cardiologist if I could continue with my walks - they said "yes". And I reported my walks on the weekly remote situation chats with the NHS hospital where originally I was to have my TAVI, without receiving any comments . A week before the op, I walked a cautious six hours; originally I'd planned to be out for three, but I felt so good that I extended it twice by 90 minutes.
A month or so before the op I had to march very quickly to be in time for an appointment and became breathless. And on the morning of the op, I lugged an overnight case from my boarding house to the hospital (I had to be there for 0700), less than a mile, and was conscious of discomfort around my heart.
I just carried on with my life as normal until I had OHS for a biscupid aortic valve with aortic stenosis, which I was born with. I had too! I had two young children and a home to look after. Just take it easy and don’t worry too much. Even though I was born with a faulty valve I didn’t get my replacement until I was aged 60 because the operation didn’t even exist when I was young. We are all very lucky nowadays.
Hi Yumz,
Sounds to me like you need to speak to somebody who knows you and your medical background as well as recent history. If you cant get hold of your specialist(I assume you mean Cardiologist) or specialist nurse, I would speak to your own GP. He will either advise or get you in front of the right person. In the meantime, I would heed the advice of your specialist nurse and use a common sense approach to any exercise....ie....keep it nice and steady whilst carefully monitoring how your body is reacting and how you are feeling.
Always better safe than sorry until you get to speak to the appropriately qualified physician.
Good luck and I hope you get the right and prompt advice.
Yeah, the advice in my cardiac rehab classes was also "talk but not sing". If you can sing, you're not going hard enough, and if you're too out-of-breath to talk then you're going too hard.
The beauty of it is that it's dead easy to apply, and it automatically adjusts to your individual capacity.
' it's caused by low mood' What is? If he's suggesting that the symptoms of aortic stenosis and valve regurgitation are due to 'low mood' I'd think twice about going back to see him.
Yeah exactly it was a women doctor she suggested that my fatigue and breathlessness is low mood not heart related because I'm 27! 😑
You'd think that kind of patronising bollocks would stop when you're diagnosed but sadly not.
She obviously has no idea about heart conditions, I've found my gp to be absolutely useless. I purchased a peak flow meter this week because I've felt more breathless, wasn't happy with results.
My furosomide dose was cut in half a few weeks ago because my blood pressure was dropping too low but now I can feel the fluid accumulating.
It's the fluid retention & the fatigue that get me down the most.
Do you suffer with fluid retention?
The joke of it is she is a cardiologist at a specialist hospital in London and she said that stuff so I have no idea why, and she was actually supposed to check my arteryz but my heart was beating to fast during the stress echo so she said that she wouldnt need to do it anyway because of my age there probably fine! 😦 Couldn't believe what I was hearing. Sorry to hear your suffering with fluid retention. I have had that problem in the past was on spirolactone and bumantide was only for 6 months though x
If it makes you feel any better I had a urological surgeon tell me my kidneys were a ok and implying I was just wasting time then when it was reviewed again by another I was given an appt with the urological oncologist within 4 weeks. Specialists can be wrong too.
Yeah that does, wow that's awful I'm so sorry x
If you're not happy you need to complain. Let them know your concerns & ask for a second opinion.
Yeah I am but my proper specialist won't get back to me I'm seeing him in may but I don't have a date for an appointment yet x
Meanwhile, I would take things easy and listen to what my body tells me. I certainly wouldn't risk exercising myself to A & E...
Sounds like you say one of these outdated , judgemental specialists , like my daughter saw last year whom basically told her young people don't have heart attacks , especially not healthy looking young ladies. She's now finally been confirmed as having ANOCA as well as POTs after a INOCA incident last month, she had, had a MINOCA just before age 21.
She also has other genetic conditions the same as mine but the cardiac conditions caused her to develop ME/ CFS.
This makes it incredibly hard for her to be active or exercise. The combination of Fatigue from a cardiac issue and CFS causes her to have low mood swings,
My physio is amazing, he works with cardio patients and those with chronic pain and fatigue disorders.
He also works with my daughter.
He says it's all about maintaining activity through the day at a level you feel comfortable doing rather than jumping into cardio activity or exercise classes.
You need to build up your confidence and doing little bursts of gentle movement helps you to tackle the fatigue and builds up energy levels so that you can try longer activities.
This is also the type of action city that helps people with mixed cardiac issues to maintain their general health , strength and flexibility without overexercising the heart before it can cope with more intense activities.
You should try some chair exercises , strolling ( even inside the house) for a few minutes each hour, try low impact, somantic and isometric stretches.
Use resistance bands to maintain muscle strength.
If you choose longer walks go on a flat surface , make sure you drink before , during and after , choose a comfortable pace and make sure you can hum or talk as you go.
Go with a friend at first. Use Nordic sticks to help improve your posture , balance and confidence.
Try learning balance and breathing and how to listen to your body signs by doing quigong and tai chi.
Don't forget housework, cooking , gardening etc are all forms of exercise
Whatever you do make sure you enjoy it , take rests , don't plan for doing a specific amount of repetitions, times or specific distances. Do what you can and actually stop while it still feels easy.
This helps you to improve your fatigue and mood and as you keep gently active your comfort zone expands so you will find you can slowly increase what you do.
Eating a varied, nutrient rich diet with plenty of soluble fibre , vegetables and fruit , lean proteins and some healthy fats and keeping properly hydrated will also help.
Don't be tempted to do any extreme diets or extended fasting , they really aren't suitable for people with cardiac issues and increase issues if Fatigue , especially if this may also be related to your hormones.
If you haven't had them tested get your Full Blood Count , Ferritin. Iron , Vitamin B12 , Folate and Vitamin D tested at your GP surgery.
If you take medications you can request these , even at your age , because meds can reduce how well your absorb nutrients for many people so you need a baseline to work from.
Anaemia and B12/ Folate/ Vit D Deficiency or Insufficiency ( very low in normal range) all cause mood swings , fatigue , muscle weakness and can increase breathlessness and exercise intolerance.
Hi, You seem very knowledgeable. Can I ask I am post Heart Ablation(2 years) and suffer from PTSD and social anxiety. I have very rarely left the flat and only now have started to take small walks. I am having issues with right arm muscle ache and also my legs ache after walks(also am type 2 diabetic). I have recently had a blood test and my results show low vit D(I am awaiting a call from the Dr). I find breathlessness, muscle weakness, and exercise a real problem and have put ot down to anxiety. Thank you for clarifying it may well be my vit d deficiancy.
First let me say well done to you , you should be proud of yourself for managing to keep trying to be active and really pleased that you have progressed to trying some gentle walks outside it's hard to do and shows you are a fighter and stronger than you believe you are.
Did you also get your Full Blood Count, Ferritin/ Iron , Vitamin B12 and Folate tested?If not , do ask for them to be done as nutrient deficiency can often occur for multiple vitamins at once.
Vitamin D deficiency does cause muscle weakness and joint pain , exercise intolerance and can increase cardiac, such as palpitations , breathlessness and dizziness and brain related symptoms like mood swings and brain fog. I could hardly move with Vitamin D deficiency and my B12 Deficiency Anaemia and was always in pain , my palpitations and tachycardia syndrome went through the roof , it also causes real heavy fatigue and made me feel very over alert to triggers and generally down because I couldn't do normal things.
Often , even if you have diagnosed Anxiety, if you have physical health issues as well the physical symptoms you may link to your Anxiety are caused by the physical problem first then it triggers an Anxiety or emotional PTSD response which makes it worse.
Find out what your Vitamin D level is.
I use a Vitamin D spray which absorbs via the mouth which works better to solve the deficiency than the prescribed oral tablets ( although I took those and adjusted how much spray was suggested initially).
I use a spray called BetterYou, Vitamin D with Vitamin K2 and took 4000iu a day until my Vitamin D was corrected.
It is available in many supermarkets and health shops as well as through their website, although it's cheapest via Amazon.
I take it everyday during Winter and every 2-3 days in Summer to maintain my Vitamin D level.
In terms of exercise try to follow the advice I gave to Yumz.
It's even more important for you to take things slowly and learn that each activity can be enjoyable and build in new things gradually that won't trigger your PTSD.
Whatever you choose keep trying little by little , and don't worry if it takes time rather get a notebook or diary and write down what you do and some positive words to yourself for doing it.
Such as , " I'm proud of myself today because I managed a short stroll to the corner and back "
Or, " Strolled in the house a few times and tried a few stretches in my chair I am so pleased with myself for keeping active "
Finding interesting ways to exercise at home is really helpful at first, especially to build your confidence.
Finding something to keep your mind off your symptoms while you are outside and being active also helps to reduce your triggers.
Try listening to music and humming to it to help your breathing .
Try creating a spotting list of things to tick off a list so your brain is active.
You can choose anything but wildlife or flowers is a good option as it distracts your mind and keeps your pace at a relaxed level.
Take photos of what you are spotting.
I'm a photographer and got into that after I couldn't do my original work as an artist.
I found doing that helped me to take rests but also gave me a positive feeling again about life and the confidence to exercise more grew coincidentally while my mind was occupied.
If you can , get to somewhere with Nature before you start your walk.
Although I started just strolling near home and taking photos of flowers I saw or interesting things looking over the garden walls.
Although it's not created for cardiac patients a good all round exercise programme is available via Versus Arthritis website and on their YouTube channel.
It uses the same types of exercises for cardiac and joint rehab.
They have many types of exercise sessions, including fun exercise activities in the kitchen with Bill Bailey .
Each session has people showing you how to do the exercises on a chair , using a chair for support , or free standing in the same video so you can choose which suits you on the day.
Something I think is sadly missing in the BHF online exercise videos.
It's a great graduated exercise programme to do at home and includes low impact pilates , dancing based exercises, tai chi and mindfulness exercises , stretching and balance activities.
Because they have a free subscription YouTube channel if you have a Smart TV you can follow them on a bigger screen in your living room. It's easier and more enjoyable than trying to use your computer , tablet or phone if you can.
Just load up the YouTube app on your TV and have your own free private YouTube account.
You can create a library of videos in your YouTube account to click on when you want on your TV.
I also find if I don't feel confident to go out I have a recumbent bike at home ( my friend uses one of those pedal exercisers that you can use in a chair) and use various videos of people walking or cycling in the countryside on my TV so it feels like I'm out and about. Keeping active but also keeping positive with yourself is key to helping your mental as well as physical recovery.
Take care , Bee
Thank you so much for the information it is much appreciated. I have a lot I can recognise from those sympotms like the brain fog and definetly mood swings. I haven't felt right for quite a while. My vit d reading is 32 and i will check regarding the other vitamins you mentioned if they were tested. I have brought some vid d supplements so will start taking those and hope for an improvement. Once again ty so much for your kind reply and information
Hello Yumz, If like me your condition causes you anxiety & depression it makes motivation & intolerance to exercise all the more difficult.
I have dialated cardiomyopathy & afib, I'm on seven different meds, many of them contribute to the extreme fatigue I experience, was only diagnosed end of August last year.
If I were you I'd just do whatever you can manage without over exerting yourself, even if it's just walking.
Do you need help with motivation because I know I do, but I have no one to motivate me.
Depression & anxiety can manifest when we don't physically use up energy through exercise.
Yeah that's exactly what it's like for me x glad somone understands. Yeah I do alot of walking even if it's for fun it's still considerd exercise for me makes me feel exhausted aswell. I will do what I can manage thank you ❤️. Hope your ok.
Thank you for asking bless you. I'm struggling mentally & physically.
I live in a rural location so was never offered cardiac rehab at a local gym, just left to get on with it alone which I've found very difficult.
I'm having my first cardioversion on the 2nd of April, an attempt to put me back into normal sinus rhythm.
I live in a very rural location, I had to travel and hour and 40 miles each way for my cardio rehab which was an exercise class in a room not in a gym. The only equipment we had was a step and some dumbbells.
Hope everything goes well in April x ❤️
Thank you.
I would always say to get the correct advice from a cardiologist, not easy, I know. I was recently diagnosed with BAV following a HA (never knew I had it). Mine is mild for regurgitation, etc but he said I'll need a valve replacement in 5-10 years time. I'm used to extreme sports but was told that I'm ok to walk but not to run, etc. I could, of course, but it means I'm going to wear out the valve even earlier and, to be honest, having been through so much with the HA, I want to put off another surgery for as long as possible, even though I can't do everything I loved.
You do want to keep active and I suspect gentle exercise is ok and as others say still being able to hold a conversation.I had severe stenosis, I didn't know I had heart issues at the time, and I over did it and you really don't want to be in that position. I was pushing hard at the end of a 5k so completely out of breath.
Take it easy and take care.
Andy
Rosie, my advice is to wait to see the nurse who has all your medical details. While you wait, rest. The motto is ''If in doubt, DON'T'' !
If you listen to all sorts of different advice from different people you WILL get confused and worried. Having a rest never hurt anyone. Make some nice healthy meals, and concentrate on that for now.
Your specialist nurse looks after several other patients, and sometimes a wait is necessary, but as long as you leave a message for her, she will be back to reassure you. Just chill, and pamper yourself as much as possible.
I sometimes had to wait to talk to my own specialist nurse, but it was worth it every time. She was in a position to know MY particular situation.
Keep smiling.
Exercise is very important whatever condition you have. I had moderate AR, used to be fairly active but now is severe, waiting for valve replacement surgery. The symptoms I am currently having do not allow my to have any strenuous exercise so I just stick to slow swimming or water treading, walking short distances at a time. You have to "listen" to your body how much you can do. Making your heart pump harder may be dangerous.
Yumz, good to see you post, not good to see the reasons why though. A lot of good advice given, self monitoring to see how much you can do (or can't do) is probably the best way to go forward. And if you can go out for a walk and spot a beautiful flower, or listen to the birds singing, take a deep breath, pause awhile and drink in the beauty of God's creation. Feel free to let your mind wander in a good way, thinking about all you do have, even though things are hard and the moment. Relaxation and forgetting your worries for a little while may help not only your mood but also your body. I find it incredible that a specialist has diagnosed your problems as low mood, but it is also understandable that you feel anxious about the future. You know you have a lot of support here, I remember reading your posts (and Valentina 98's) when I first joined the forum. You will continue to be in my thoughts and prayers.
May I suggest that you talk to your specialist nurse first before you start any exercise, it's best to be safe than sorry . Good luck
That's what I've been trying to do but no one getting back to me? X
Just be careful, I understand you want to exercise like everyone does but it sounds like you need advice first. Only you knows what's best .
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